Today at her special needs school in Lakewood, Colorado, Rachel participated in bike day. Unable to see and barely able to walk with tremendous assistance, they brought adaptive bicycle equipment for her to enjoy.
She has been on the patch for 2 days which will hopefully decrease her saliva production because her terrible choking cough has been getting worse as saliva creeps its way past her faulty epiglottis. She also had a grand mal seizure tonight at respite.
Here are two pictures her principal emailed me tonight:
Despite passing her swallow study in May, Rachel’s body continues to fail her because of this wretched disease. Over the last 3-4 months I have noticed that she has been coughing a lot and after researching the effect of neurological disease on swallowing, observing Rachel and watching this become a frequent occurrence I decided to take action.
The hope by starting Rachel on Scopolamine she will decrease how much saliva she is producing and will choke less. This medication is administered through the skin, kind of like a motion sickness dot behind the ear.
Today is day 2 and I haven’t seen much (if any of an improvement) but hopefully I’ll see something by the weekend.Read More
Thank you so much to all of the GoFundMe donations toward Rachel’s van. I found a van only a few minutes away with low mileage and a great price. I am still working on raising a bit more money to purchase a fold up hoyer lift. Meet Cartman:
So I finally did it. I have been thinking about it and after it was suggested again and again (and again), I created an online, “crown funding” campaign to help me raise the money I need to trade in our older Navigator and get a wheelchair van that Rachel can ride in… in her wheelchair. My pride, as a person, has vanished but I know it was the right thing to do. Sometimes I hate doing the right thing. Over $1000.00 towards the van in just a few hours. Thank you for sharing and donating. Please continue to share the link because these vans, unless you want a retired airport shuttle bus with 250,000 miles, are expensive! On behalf of my Rachel who is losing her walking legs faster than I imagined, and my other 3 kids who still like to go places like NORMAL kids… thank you. And thank you from me. SEE RACHEL’S VAN CAMPAIGNRead More
I spent a lot of time in the car yesterday driving. Driving to see the kids new school (which is on the other side of Denver) driving Rachel to respite (and back. Twice.) and running a bunch of errands.
When I got home from running my errands I found that my friend’s husband, who will probably kick my ass for not referring to him as my friend (which he totally is but we don’t admit it, or hug lol), had built Rachel this:
My parents, with the help of my brother, built something similar for Rachel back in Massachusetts so Rachel could enter my parents home. I never expressed my thanks because it’s too painful to realize that that is her future. Yes it is inevitable that she is completely losing the ability to walk but sometimes I just can’t face it.
So for what its worth: Thank youRead More